The sleep study is scheduled!

The sleep study is scheduled.  Unfortunately, it's not until August 21!  I guess the doctor wasn't kidding when he said it would be about two months away.  The lady I talked to said that there are always cancellations and that I can call every other day to check.  So I guess that's what I'll be doing for the next two months!  Hopefully we'll be able to get in sooner.

CHOP update

We all took a ride down to Philly today. It was a crazy rainy day which made the trip even longer.  Because of the weather, I guess a lot of the appointments before us were running late.  Zadie's appointment was at 11:20 and we didn't see the doctor until after 2!

Dr. Javia looked at Zadie's ears.  She has an infection in her left ear, which we suspected.  Since she has a tube in there, it didn't seem to be hurting her, it was just draining a lot and she kept picking at it.  She was prescribed antibiotic drops for that.  The tube in her right ear fell out and is still sitting in her ear canal.  He said it will eventually fall out of her ear.  Even though she didn't pass her hearing test in that ear in April, possibly because the tube is out, we will just monitor it for now and will not take any action.

Since Zadie is doing so well with the capping, we are now cleared to get scheduled for a sleep study.  Unfortunately, Dr. Javia said it might be a couple of months until we can get in.  But, he recommended that we keep calling to ask about cancellations, etc.  If the sleep study goes well, then Zadie will be scheduled for decannulation.  When she had her bronchoscopy in September, Dr. Javia noticed that her adenoids were rather large, and they will possibly be a problem.  We won't know that until the sleep study, though.

I'm waiting for the sleep study department to call me with a date.  I'm very anxious about all of this.  They will not attempt decannulation in the winter, so we have a limited amount of time to get everything done.  It will all happen eventually, though, so if it doesn't happen this year, all is not lost.  I'm just really hoping it does!

As all good trips to Philly end, we stopped at Pat's for some cheesesteaks.

Zadie turned 2!

Zadie turned 2 on Friday!  She had a fun day, spent some time at Jonathan's preschool, then we went to Chuck E. Cheese and then out to dinner.  For the first night in over a week, she didn't need oxygen while sleeping.  Yesterday, Grandpa and Uncle Sammy came over.  I made cupcakes and we attempted to sing happy birthday, but it was confirmed that she really doesn't like people singing happy birthday to her.  She gets very upset!

Just an update on her progress...she is talking a lot. She still gets speech therapy once a week, and is saying all sorts of words, including uh-oh, oh no, water, wow, mouse, and the old favorites mama, dada, baba and baby.  She's getting big, too.  She went to see her pulmonologist the other day and she's now 24 pounds, which is great.  She's moved up in percentiles.  She's eating more and more.  She's also getting very fresh, scuffling with Jonathan and throwing toys.  Typical 2 year old, I guess!

Fresh out of the oven May 31, 2011

May 31, 2013

You can really see the difference in Zadie's chin from her newborn picture to her current picture.  One of the things about Pierre Robin Sequence that made it difficult for Zadie to eat and breathe was the recessed chin (micrognathia).  If she was born at another hospital, she probably would have had a jaw distraction, but St. Barnabas doesn't really do them and they opted to let her chin grow out on its own.  A plastic surgeon at CHOP wanted to do the distraction later on in order for her to lose the trach, but we decided to wait and see what happened.  So far, I think we made the right decision.  Her chin has grown out a lot and her trach is capped all day long, meaning she's breathing through her mouth and nose.  We're hoping she is decannulated (loses the trach) this summer!

A year ago today...

A year ago today, Zadie had her palate repaired.  I can hardly believe that much time has gone by!  That surgery was what we were looking towards her first 11 months, and here it is, a whole year after it.  It was not an easy surgery, but she bounced back remarkably well.

Right after surgery 5/1/12

Before her palate repair, she could barely suck from a bottle.  Now she drinks like a champ and is really improving with eating solid food.  And her food doesn't come out her nose anymore!

Eating!  4/2013

Hearing test

I took Zadie to get a hearing test on Friday.  Her ENT at CHOP wanted it done, and rather than trekking all the way to Philadelphia, we were able to visit their specialty center in Princeton.  

The audiologist checked the placement of Zadie's ear tubes first.  The left one was in place and unblocked.  She could see the right one in her ear, but it's either blocked or not in place.  Therefore, she has some hearing loss in that ear (which is hopefully temporary).  

I talked to the ENT's office, and we are going to try to unblock the tube by dropping hydrogen peroxide into her ear 2-3 times a day for up to a week (or if she starts showing signs of pain, we will stop sooner).  Once we are done with that, we will be dropping ofloxacin drops in her ear for 5 days.  Hopefully this will unblock the tube.  We are seeing the ENT in June anyway, so by then, he'll be able to look in her ear and see what needs to be done.  

In other news, Zadie is doing great wearing her Passy Muir valve.  She wears it all day while she's awake (we take it off for naptime) and she's even building up the time that she wears a cap (which completely blocks the trach and forces her to breathe only through her mouth and nose.)  Since she's been wearing the Passy Muir so much, she's been vocalizing a lot, and is really building up her vocabulary!  I'm hoping that by the time we see the ENT in June, she is wearing the cap all day and we can schedule a sleep study to see if we can get rid of the trach!

Questionable urgent care & the response

Last Wednesday, Zadie's fever just wouldn't quit, even with regular doses of alternating Tylenol and Motrin.  I called her pediatrician and the soonest appointment was 6:45 that night.  I didn't want to wait for her to be seen, and since there was a good chance that her ped was going to want her to get an xray, I decided just to take her to the new urgent care place that I had been to twice recently, once for Zadie and once for Jonathan.  It's a really nice place, and they can do xrays there, so we can avoid trips to the ER.  I really liked the place the other two times we'd been there.

However, I'm not so sure about the care Zadie received there this time.  I pointed out Zadie's gunky eyes to the doctor, but she didn't say anything about them, and didn't prescribe anything for them.  I figured that meant they were junky just from her congestion.  That night, after the bloody eye incident, her pediatrician immediately diagnosed her with conjunctivitis and prescribed drops.  And, two days later, the eye doctor confirmed the infection.

Then, later on Wednesday night, Zadie's nurse questioned the prescribed dose for the oral steroid.  The doctor at urgent care had prescribed 15ml every day for five days.  It seemed like a lot.  When we looked back at the same medicine she was prescribed about a month earlier, the dose at that time was 3.5ml every day for five days.  Very big difference!

On Thursday, I called both the pediatrician's office and Zadie's pulmonologist's office to ask them about the dosing, since the urgent care wasn't open yet.  The pediatrician said 15 ml was way too high a dose for her, and said it should be 4 ml.  The pulmonologist said she could have a dose of 7.5 ml, but she also said the 15 ml was way too high.  Later on, I spoke to the doctor at urgent care who saw Zadie.  I asked her about the dose and she said, oh, that's way too high.  She apologized profusely and said that the correct dose should be 3.5 ml.  Pretty concerning that such a big mistake was made.  I then asked her about the conjunctivitis and she said she did look at her eyes, and didn't feel that it was conjunctivitis.  She continued to profusely apologize for the mistake in dosing.

Yesterday (Monday), the medical director of the urgent care called me.  He asked how Zadie was feeling, and then he told me he was made aware of the dosing mixup and he apologized profusely.  He said because of this mistake, a new policy was in effect at the office to avoid this happening again.  Apparently, they generally go by kilograms for weight, but someone wrote down Zadie's weight in pounds, and that's where it went wrong.  Zadie's only 10 kg, but that's 22 lbs.  So someone read her chart as if she weighed 22 kg.  Their new policy is to only record weights in kg so there are no more mixups.

What's scary about this is that there's no real way to know, as a lay person, whether a dose you've been prescribed is correct.  I'm not sure if the pharmacist should have picked up on the mistake, but it wasn't picked up there.  If Zadie's nurse wasn't the one giving the med, I'm not sure it would have been picked up at all.

Good news is, Zadie is feeling much better!

Eye doctor visit

We took Zadie to see the eye doctor today to follow up on the bloody eye incident.  He checked out her eye, looked at the picture we took, and was still a little puzzled.  He said it was probably just from the infection (conjunctivitis) in her eyes.  He was puzzled especially because her eye wasn't bloodshot at all.  But, the good news is that her eyes look great.  Since Stickler Syndrome, a condition that involves eye problems, is often associated with Pierre Robin Sequence, she was due to have an eye exam.  Like all of the other doctors who have looked at her, the eye doctor didn't suspect Stickler Syndrome for her, just based on her physical appearance.  He dilated her pupils and checked her vision, and it's good!  She's feeling much better and her pink eye is improving!